By Halima Athumani

KAMPALA, Uganda

A couple in Kampala, Uganda have shared their heart-rending story of how they are living with the fear they could lose a third child to sickle-cell anemia.

Seven-year-old Imran Kacie Buuza was diagnosed with the serious illness at eight months and has suffered four strokes since Jan. 2015.

The World Health Organization says the disease -- which distorts the shape of the body’s red blood cells -- can lead to “chronic acute pain syndromes, severe bacterial infections, and necrosis (tissue death)”. The hemoglobin disorder is mostly found in Africa.

In 2008 the WHO declared sickle-cell disease a major public health problem for sub-Saharan Africa. It was noted that between 15,000 to 20,000 babies are born with sickle-cell disease every year in Uganda, and 80 percent of them die before their fifth birthday.

Behind the statistics is the story of an individual and their family -- and for the Buuza family the nightmare had just begun.

On Feb. 14, 2015, Imran -- who had been playing and running around while his family was eating out -- suddenly stopped talking in what later proved to be his second stroke.

His father, Hakeem -- a sickle-cell carrier -- recalled: “His eyes rolled, his jaw dropped and he couldn’t talk. We ran out of the restaurant to the nearest hospital for another transfusion.” This time the stroke affected the right side of Imran’s brain and shut down his left side of the body, leaving him partially paralyzed.

In March this year, Imran’s condition worsened. His mother Lynn Najjemba said that while he was doing homework, Imran could not remember the alphabet, write his name, recall numbers or spell words.

“He never wrote anything meaningful and would only doodle; we thought he was being moody because of his condition, but our reaction was to force him to do it.”

After a complaint from teachers at school, Imran was taken for another hospital check-up where his parents were told he had suffered a third stroke.

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Mulago National Referral Hospital in Kampala uses an ultrasound which screens the brain to tell whether a child is at risk of stroke.

Dr. Munube Deogratias, a pediatrician, said: “The challenge with screening is that you need to provide an intervention which is a blood transfusion and it’s not readily available, so we are not able to identify children who are at risk of stroke.”

But, the worst was yet to come. On May 4, Imran slept in late and missed school. When he woke up, he collapsed on the floor. In panic, his mother says: “He started mumbling, he was drooling with saliva, he couldn’t speak and I rushed him to hospital.”

Imran was admitted into an intensive care unit where he spent a week and the stroke -- his fourth -- was controlled. Imran is now fed through a tube inserted into his nose and undergoes speech and physiotherapy.

Their doctor has warned them a fifth stroke will be fatal.

A 2016 study of sickle-cell genes by doctors from the Makerere University School of Public Health and Mulago National Referral Hospital found that 13 percent of Ugandans have the sickle-cell gene.

It is more worrying in the northern Acholi and Lango regions where this figure jumps to 40 percent compared to Central and Eastern Uganda where the gene is at 20 percent.

The study noted that the disease burden is at 0.7 per cent across the country with seven out of every 1,000 being born with the disease.

Managing Imran’s condition has been an expensive burden for Hakeem and Najjemba, even with medical insurance. “Most of the relief medicines are not paid for by insurance, so you have to pay out of pocket,” they said.

Because of the continuous hospital visits “at one point the insurance company called us and said: ‘Your child is always in the hospital, your insurance package is almost depleted.’”

 Financial strain

Within a week of admission after the fourth stoke, Imran’s parents had to pay more than $2,000. Najjemba had to quit her job as a public relations officer and Hakeem has asked for extended leave. “We have been strained financially and all the money goes into taking care of one child; that’s why we decided to carry out a fundraiser to save his life.”

In the last two months, through social media campaigns, the couple has managed to raise $35,000 out of the $100,000 needed for a bone marrow transplant in the U.S.

Dr. Deogratias said many parents sought medical attention for their children at a late stage because they are ignorant of the signs. These include persistent crying, swollen hands and suffering from severe anemia.

Between 60 and 100 children receive care at the Mulago sickle-cell clinic -- the only one in the country. Around 10 to 15 children are admitted daily. Dr. Deogratias revealed that out of these admissions, almost seven percent will suffer a stroke.

Dr. Anthony Mbonye, Uganda’s director-general of health services, said the government has been making strides in managing and treating the disease. “We started targeted newborn screening in the high burden districts in the North, East and Central parts of the country.”

So far more than 50,000 newborn babies have been tested and clinics given relief drugs like penicillin, anti-malarials and folic acid. The government is also encouraging pre-marital counseling and testing for couples.

But for the Buuza family, the struggle goes on. For Hakeem, who is now the only breadwinner in the family, every day that Imran lives is appreciated: “I wake up with one worry on my mind: ‘Is he breathing? Is he walking fine?’ We are afraid of the fifth stroke.

“Whenever I receive a call from his mother, I pray she isn’t telling me it has happened.”